May is Nemaline Myopathy Awareness Month, and A Foundation Building Strength is excited to celebrate with you all month long! We’re raising awareness for this rare muscle disorder and fostering connections within the NM community.
Throughout the month, we have lots of exciting events and resources planned to help shine a light on Nemaline Myopathy, all culminating Nemaline Myopathy Awareness Day on May 31st!
Here’s how you can participate:
Raise Awareness
- Follow us on Facebook & Instagram! Watch our feed for exciting new content from community profiles, to new video content, to exciting research updates…and more!
- Show your friends and family that it’s Nemaline Myopathy Awareness month by changing your social media profile picture!
To make your own NM Awareness Frame, use our Canva Template! Click on “Upload” to upload your favorite photo, tap to select it, then move the photo slightly and it should drop into place! Then tap the share icon in the upper right corner of your screen, click “download”, select the pages you want to use, and click “download” again!
OR
Download one of our Special NM Awareness Graphics below by right clicking on the image you want to use to save it to your device:
- Download and print a set of NM Awareness Cards. These informative cards are a helpful tool to share with curious on-lookers, new acquaintances, or anyone that is not aware of what NM is. This card will help bring more awareness to NM in your community. You may also request complimentary cards directly from AFBS by filling out this form.
- Participate in the NM Awareness Share-A-Thon!
Join the NM Awareness Share-A-Thon
May 18th – May 31st we’re celebrating NM Awareness Month with our second annual AFBS NM Awareness Share-A-Thon, and we need your voice to make it our biggest one yet! This isn’t just a fundraiser; it’s a global movement to put Nemaline Myopathy on the map and fuel the search for effective treatments.
How You Can Participate:
- Create Your Page: Launch your own personal fundraising page to share your story and collect donations from friends and family.
- The Big Kickoff (May 18th): From May 18th through NM Awareness Day on May 31st, we’ll be releasing special Share-A-Thon posts design to educate and spread awareness about Nemaline Myopathy on Facebook and Instagram.
- The “Power of the Share”: We have a goal to reach 500 total shares. Once we hit that milestone, a generous donor will trigger a massive matching gift of up to $25,000, effectively doubling the impact of every donation, with 100% going directly to research!
Your shares (and donations!) are the catalyst for progress. By simply hitting “share,” you help educate the world about NM and bring us closer to the research breakthroughs our community deserves.
Let’s create a tidal wave of awareness together, one share at a time!
Advance Research
If you’re a member of the affected NM Community, you can play a vital role in advancing research to find effective treatments!
- Join our Retrospective Digital Natural History Study by signing up with Citizen Health! You’ll gain the added benefit of centralizing your entire medical history in one convenient digital location, complete with a cutting-edge AI tool to query your medical records. Your de-identified data will help us gain a deeper understanding of Nemaline Myopathy.
- Join the Muscle Disease Registry: Register with the CMDIR to help give scientists the data and tools they need to perform necessary and important NM research.
- Get sponsored, no charge Genetic Testing to confirm your diagnosis: Fill out this short interest form to get started and a dedicated member of our staff will reach out to assist you. Contact stacy@buildingstrength.org for additional support.
- Donate tissue samples to the Beggs Lab NM Biobank for use in NM research. Fill out this interest form or contact Stacy.Cossette@childrens.harvard.edu for next steps
- Make sure your clinicians are using the ICD-11 medical code for Nemaline Myopathy: G71.21